Rants from a Special Needs Mother of a 6 year old Autistic daughter and a 2 year old son with Cerebral Palsy

Tag Archives: Trump

One Election Day, America changed. We elected a man who had made unprecedented statements regarding people from all walks of life. I will hold off on my opinions on building the wall and grabbing women by the pussy as much as I can. My focus here today is our Special Needs community. My back story involves a child with Autism Spectrum Disorder and another child with Cerebral Palsy. I hope to do all disabilities justice in this article, but I admit my knowledge is limited as a special needs parent to these specific situations. To be completely transparent, I am a liberal democrat. I was called a “libtard” during the election season and would like to give an early FU to anyone who wants to use any version of the word retarded. It’s not nice. Don’t say it.

Worry #1 – Repeal of the Patient Protection and Affordable Care Act (aka Obamacare, for those of you that didn’t realize they were the same thing)

One of the most important provisions of ACA is “guaranteed issue” which prohibits insurers from denying coverage to individuals due to pre-existing conditions. Health insurers can no longer charge more or deny coverage to you or your child because of a pre-existing condition like asthma, diabetes, cancer, cerebral palsy, or autism, diabetes, high blood pressure, or even pregnancy. It is unclear what Donald Trump plans to do. He has stated previously that he would like to keep insurance companies from denying people coverage for preexisting conditions, but as we have seen so far, he doesn’t always keep his promises. Luckily, the Obama administration has put several protective measures in place to make it difficult to repeal this particular part of the law right away.

How the repeal already makes my life hell. – My husband’s employee covered insurance is a loop hole in the Obamacare regulations and was already a loop hole well before the election season happened. The company has what is called an “employee-brokered health plan” meaning they made a deal with the insurer to cover the costs and it allowed them to not follow the Obamacare provisions. But, to keep from having a full blown riot, they generally followed the provisions anyway. Then, my kids got diagnosed with disabilities. Then, they had to have multiple weekly therapies. Then, Obamacare required insurers in my state to offer ABA therapy to children with autism starting January 1, 2017. Then, the election happened. Then, Donald Trump won and swore to repeal Obamacare. Then, my husband’s employer raised his premiums by $100 per month due to the high cost of covering our children. Then, they refused to cover ABA on January 1, 2017. Then, after waiting for months to reap the benefits of ABA for my autistic daughter, we can’t get it.

I worry that “Trumpcare” will leave my children behind in favor of the insurance companies making more money again. My children cost them money and lots of it. Money I don’t have.

The Individuals with Disabilities Education Act (IDEA) is a piece of American legislation that ensures children with disabilities receive the same opportunity for education as those students who do not have a disability. Whenever I went into my first IEP meeting, I was afraid due to the horrible experiences I had read about. My husband and I specifically moved 1,000 miles away from the only home we had ever known to get a better life for our children. The county we moved to brags on its high schools that have at least 3 in the top 10 high schools in the United States depending on which list you look at. Their academics are outstanding and their opportunities are plentiful. The elementary schools in the area are equally as impressive and my daughter’s school campus rivals my undergraduate school. Had we stayed in our old area (very rural, deep south) our daughter would have been kicked out of school due to behaviors related to her autism. I worked as a teacher in the school system and the special education there was severely lacking as is there regular education, so they keep it even. When I left my IEP meeting at my daughter’s new world-class school, I was satisfied. That’s all.

There is currently a U.S. Supreme Court case regarding a special-needs student in Colorado. The question in the case is basically: What level of support are public schools required to give to pupils with special needs? IDEA requires that federal funded schools have to offer “free and appropriate education” to disabled students. The Colorado student in question has Autism and his parents stated that the public schools plan was to just pass him from grade to grade. The parents felt that this was not “appropriate education” citing their experience with a private school that their daughter showed tremendous growth in. The decision could change the lives of many special needs students across the country. If my daughter goes to a school that provides exceptional education services to all of their students, I expect my daughter’s situation to be the same. Currently, its as if they are just buying time to push her through and not help her behavioral issues as much as they can. Am I getting a better situation than most parents with special needs kids in school? Absolutely. But, it’s still not right. People shouldn’t have to move to get a better education for their kids.

Which brings me to Trump. And M-Effing Betsy DeVos

Betsy DeVos. Learn her name. Know her name. Know it well. Donald Trump nominated her to serve as Secretary of Education. She was born into a billion dollar family. She never attended public school. Her children didn’t attend public school. She, nor her children, nor her parents have ever taken out a student loan. During her confirmation hearing, she was slammed by the democratic senators.

Senator Tim Kaine asked Ms. DeVos if federally funded schools should be required to meet the requirements of IDEA. Her response – “I think that it is a matter that’s best left to the states.” Senator Kaine then stated “So some states might be good to kids with disabilities, and other states might not be so good, and then what? People can just move around the country if they don’t like how their kids are being treated?” Her response again – “I think that is an issue that is best left to the states.” He continued by saying “It’s federal law.” Something she clearly didn’t understand entirely and later admitted to being “confused” by it when questioned further by Senator Maggie Hassan, who has a son with cerebral palsy. Senator Hassan asked Devos “Do you think families should have recourse in the courts if schools don’t meet their needs? Devos replied by saying “Senator, I assure you that if confirmed I will be very sensitive to the needs of special needs students.” Hassan stated “It’s not about sensitivity, although that helps. It’s about being willing to enforce the law to make sure that my child and every child has the same access to public education, high-quality public education.”

She has the potential to put many special needs children in danger of not receiving the education that they already struggle to get at an acceptable level. If it is left up to the states, it could be disastrous for many families, especially in lower-income states.

Worry #3 – Donald Trump and his blatant disregard for human decency

In November 2015, in the beginnings of his outrageous campaign, Donald Trump openly mocked a well respected New York Times reporter, Serge Kovaleski, who has arthrogryposis, a congenital condition affecting the joints. Kovaleski contributed to reporting that won The New York Times a Pulitzer Prize for its investigation of the Eliot Spitzer prostitution scandal, but is now better known as the disabled guy Donald Trump made fun of.

Despite your political views. Whether you are pro-life or pro-choice. Pro-universal healthcare or pro-privatization. Democrat or Republican. Can we all agree as members of the disabled community, that making fun of someone with a disability is bull shit? And if anyone, President or not makes fun of my disabled children I will become a raging beast woman.

Election Night was hard for me. Teaching someone with Autism social situations is difficult. Teaching any 6 year old social situations is difficult. But, you try to teach them right and wrong, good and bad. My son is only 2, but she recognizes that he is different physically. Van Jones of CNN broke my heart the night of the election. I was watching live when he stated “It’s hard to be a parent tonight for a lot of us. You tell your kids don’t be a bully. You tell your kids don’t be a bigot. You tell your kids do your homework and be prepared. Then you have this outcome.”

One day, I will have a hard conversation with my daughter about why the President of her country made fun of someone with hands like her brother. One day I will have to explain it to her brother. One day, they will be bullied because the President made the culture less sympathetic to social ridicule of all minorities including those with disabilities. This may seem like such a small moment when a man made fun of another man. But the social and cultural reach of this is dangerous. The life our country was building for our children will not be the one we envisioned for the next 4-8 years and maybe more. “Make America Great Again” is a dangerous slogan for people with disabilities. In the past, they were put in buildings and avoided for education and institutionalized for lack of a better option. It costs our government billions of dollars to support our disabled. I’m sorry if I don’t trust a billionaire who doesn’t pay taxes to protect that support.

I cried in from of my daughter the next morning. She just went on about her business since she doesn’t get emotions at all. I was a teenager when 9/11 happened. I lived in South Louisiana during Hurricane Katrina and Hurricane Rita. I graduated college in 2008 and entered the workforce during the worst economic times this country had seen since the Great Depression. After coming from a racially divided and charged area, it was refreshing to have a black man become President and speak of unity and hope. I have worked as an Investigator for Child Abuse and was impressed by the work Clinton had done in protecting those children. I had prepared to tell my daughter that a girl won the Presidency of the United States. Instead, I don’t know what to tell her. I was excited when she made a friend at school. Parents of children with Autism know that’s a big damn deal. Her friend is Hispanic. Her parents are immigrants. FML.

Today is our last day in the Obama administration. Godspeed everyone. Fight for your children and your lives. And good luck. We’re going to need it.